"The origins of the medical family history ultimately trace to genealogy. Genealogy is the study of a person’s identity as defined by ancestry and vital records. Typically, this includes an extended family tree defining biologic relationships and certificates documenting basic milestones in life such as birth, marriage and death. The death certificate often includes the cause of death and is essentially a piece of medical information. In addition, facts regarding education, occupation and medical health are often compiled. Taken together, this collection of information defines an individual as part of a larger biologic system, namely the family, and the family tree identifies among other things the patterns of disease present in a particular family. Therefore, genealogy defined many of the basic tenets of the medical family history.
The medical family history traces to antiquity. Hippocrates is generally credited with developing 'case histories' which included observations regarding the importance of family history in addition to clinical evaluation in the role of disease manifestation. His emphasis on prognosis, at a time when treatment was limited, was largely informed by the observation that disease type and severity often appeared to 'run in families'. This was the precursor to risk stratification. The modern medical family history is a record of illnesses and other pertinent health issues among family members. Conventional, albeit underused, applications of the family history include confirming medical diagnoses, identifying family members at risk for various conditions and calculating risk for developing a particular disease."
There are some in the reproductive medicine industry who think that the full genomic sequencing of a donor will remove the need for knowing the donor's complete and updated family medical history. Currently, donors fill out a medical history form when selling their gametes, but that is only one day in the life of that healthy young donor. Quite often the information is incomplete or inaccurate and is rarely updated over time. It's my understanding that genomic sequencing wouldn't have helped many of our DSR families who have reported children with diseases not easily identified by genomic sequencing.
• More than three-quarters of surveyed donor-conceived people were searching for their donors to learn more about their medical history.
• 84% of sperm donors have never been contacted by their clinic(s) for medical updates.
• 23% of sperm donors felt that they or close family members had medical/genetic issues that would be important to share with families.
• 97% of egg donors have never been contacted by their clinic(s) for medical updates.
• 31% of egg donors felt they or close family members had medical/genetic issues that would be important to share with families.
From a Scientific American article, "How Useful Is Whole Genome Sequencing to Predict Disease?" "Few diseases have strong enough genetic components to make sequencing a solid way to assess individual risk. ... Muin Khoury, director of the Office of Public Health Genomics at the U.S. Centers for Disease Control and Prevention, says, 'whole-genome sequencing is a great tool, but it's not ready for prime time—for a number of reasons.' Among those reasons, he notes, is that we have definitive genetic correlates for very few diseases—most of which are relatively rare in the general population. Most diseases are not inherently genetic in nature, and even if they seem to have some associated genetic hallmarks, those are not strong enough to be able to say for certain that a person will or will not get the disease at some point in his or her lifetime. ... Although the extra genetic information might not hurt, for an individual who is looking for educated estimations of disease risk, having strong family history and personal health and lifestyle information are some of the most valuable data points one can take to the doctor."
The Surgeon General's Family Health History Initiative tells us: "Your family health history can help your health care practitioner provide better care for you. It can help identify whether you have higher risk for some diseases. It can help your health care practitioner recommend actions for reducing your personal risk of disease. And it can help in looking for early warning signs of disease."
Misha Angristis an Assistant Professor at Duke University's Institute for Genome Sciences & Policy, its Science & Society Initiative, and a Visiting Lecturer at its Sanford School of Public Policy. He holds an M.S. in genetic counseling and a Ph.D. in genetics:
"I guess I would say that sequencing might be necessary but it’s certainly not sufficient. IMHO we get into trouble when we fetishize WGS. For most of us—today at least—it’s unlikely to provide much of a boon to our health. But for donor-conceived people with anonymous biological fathers, one could argue that every bit of information has the potential to be useful. So while people should absolutely have access to their genomes, we shouldn’t pretend that genomes are a perfect proxy for a detailed family history."
Knowing your family's medical history can be most crucial when it comes to screenings and preventative care. The CDC and the National Human Genome Research Institute agree: "Tracing the illnesses suffered by your parents, grandparents and other blood relatives can help your doctor predict the disorders to which you may be at risk, and help you take action to keep you and your family healthy."
Donor Sibling Registry members have reported a wide variety of health and genetic issues, as well as clinics' refusal to update or share medical information. For example:
From a parent: "I was contacted by TSBC when my son was about 3, indicating 2 half-siblings had been diagnosed with Tourette’s, Tic disorder, and ASD. At the time, we were uncertain of my sons diagnosis but clearly there was something going on. Fast forward a couple of years and he was diagnosed with high functioning ASD, ADHD, and later bipolar disorder. My daughter had sensory processing disorder. We have been in contact with 3 half-siblings, two of which have mental health and neurological challenges. The one half-sibling male, one year older than my son, has the exact same diagnosis as my son."
From a parent:"My son has Asperger’s, as do 4 of the 8 children we have made contact with. Worse, our donor has a genetic defect that results in aortic aneurysms and dissection. Half of his 33 living children will inherit the same. My son did; he had open heart surgery at 17. I know it is a crapshoot when you rely on a stranger’s DNA, but there needs to be tighter regulation in the sperm banking industry."
From a parent: "3 of my twins 1/2 siblings tested positive for TS (tuberous sclerosis). This was a blessing and a curse. It brought previously unknown parents into our sibling group (or parents of siblings) but it also showe'd all of us the dark side of donor banks. Through growing and getting to know other families, we found out that there are a few kids that were diagnosed ASD, including my twins. The myriad of emotions I went through ... like "I did not sign up for this! This is WHY I went through a cryobank to get genetic history and know health issues" etc. It turned out that the donor was a mosiac carrier for TS. I am unsure about the rest but WITH the ASD diagnosis ... my twins also have a genetic deletion. So I am wondering if there are others and the sibling parents either just don't know or are not coming forward."
From a parent: "I was wondering if you could help with the following. Suppose a paren't has a donor child, diagnosed with autism spectrum disorder. Then, one would find out the identity of a sperm donor (when the donor child is still young), only to discover that the donor has autism too, and apparently in a more serious way than the child (meaning, it should have been rather obvious for the donor bank when the donor offered his services). Can you hold a donor bank [California Cryobank] liable? Or are they under any legal obligation to refuse potential donors with autism? What do you need as proof, in order to start a case?"
From a former sperm donor: "I received an email today from the birth mother of one of my offspring, a first! What a thrill! She chose me as a donor 25 or so years ago because I indicated that I would be open to contact. When her son was 16, he was diagnosed with MS. They learned there was a genetic link. She contacted the center and was told they were not allowed to contact me and would not give her any info. They even denied having a sperm donor program. She finally convinced them to send her the original information she had received to choose a donor. It was like a big secret they did not want her to know. I was never contacted by the clinic [Cryobiology], even though I had provided them with updated contact info over the years!"
From a former egg donor: "Some fellow egg donors in a ED group admitted to lying and/or purposefully withholding information on their applications so they could be accepted. One ED even told another potential ED how many days to be off her meds so she could clear any screening done. Its not just sperm donors who cheat to make a buck. There needs to be far more accountability."
From a parent: "It has been proven that the siblings have a 50 percent chance of inheriting a rare medical condition from the donor. The death rate is about 20% per year and first sign of the condition is death at sleep or rest. We are looking at the period of 1978-1985 as the period of the donation for the donor. Some of the period between 1980-1983 might have been in New York State. We have been unable to get further information from the University of Florida, Shands, the donor, or from the attending physician concerning more concrete information. We know of three siblings and each carry the gene. There are also two children by one of the siblings that carry the gene."
From an offspring: "I have a genetic blood disorder called Prothrombin Gene Mutation, thought to be passed down from my sperm donor."
From a parent:"I had genetic testing on my 2 boys that were conceived from the same donor. They inherited a mutation on a gene that is known to cause autism and Rhett syndrome. Both of my boys are autistic. One of their donor half-siblings who is also autistic just received genetic results and she also inherited the same mutation in the same exact spot in the genome as both my boys."
From an egg donor:"I was an egg donor over 20 years ago ... I called the office where I donated and let them know about my son having ADHD, anxety, bipolar, etc. so they could let the offsprings family know. I am assuming, because it was 100% confidential ... they really didn't seem like they were interested or were going to pass the information on."
From an egg donor: "I donated my eggs four different times at Genetics & IVF Institute in Fairfax, VA in the 90s/early 00s. Since then I discovered I carry a gene which means I'm at a much higher risk for getting several types of cancer. Since then I've tried to contact Genetics & IVF Institute so that they can relay this information to my offspring (they have a 50/50 chance of inheriting it) but they were not interested and it was obvious that they were not going to inform the families despite the fact that early screening could potentially save these childrens lives. I've recently turned 42 years old and I was just told this week that I most likely have ovarian cancer (this will be confirmed through pathology after surgery) and that I will need my ovary removed ASAP. I don't know if this is because of donating my eggs when I was younger or because of my family history. Its very upsetting either way."
From an egg donor:"I have been a member of the registry since 2004. I donated eggs in 97, 98, and 99. I am concerned about the children that may have resulted from those cycles. I have been diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD). I have 4 children, 2 have the disease. One does not and the youngest has not yet been tested. He is 15 and conceived from the cycle in 99. I kept 3 eggs and donated 20. I contacted the clinic immediately after I found out. They completely accepted the information but did not give me any real Indication that they would relay the information. I lost my mom in 2005 to an aneurysm as a result of the disease. My niece had aneurysm surgery 4 years ago. She was the youngest diagnosed with serious complications. My sisters are both in renal failure waiting for transplants."
From a parent:"The only way we found about a serious genetic eye condition was because we had already found a large group of donor siblings and upon joining the group, the paren't of the child with the condition contacted me and told explained the condition and the importance of having my son screened no later than 3 years of age. It is a very rare but treatable condition. It turned out my son has this condition and had we not had that info my son would most likely ended up having serious vision problems due to it being caught too late. The bank we used had this information but it was not shared supposedly because only one donor sib at the time had it and there was only a 12.5% chance that other donor sibs would have it ... regardless, the info to have my son screened saved his vision and I will forever be grateful that I have the connection I have with the 12 other donor sib families!"
From an offspring:"I am donor-conceived. I just found out who my bio father was. Sadly, he died 7 months ago from stage 4 renal cancer. He was only 49 years old. Also, there is some bad history of suicide and bipolar disorder in his family. I called the cryobank, Reproductive Resources in Metairie, LA. I told them his medical information and that they must immediately inform all other offspring of this information. They said they couldn't do that. What can I do? This could be a life or death situation. To withhold this information is unethical and criminal."
From an egg donor: "I am an ovum donor and I have Ehlers-Danlos Syndrome types 2 and 3, and my two children do as well. This was only discovered in my 30s. I so wish I could tell other offspring." [From the Mayo Clinic: "If you have the most common varieties of Ehlers-Danlos syndrome, there's a 50 percent chance that youll pass on the gene to each of your children."]
This Q&A is from an interview with Wendy Kramer by the Center for Bioethics and Culture (CBC) National Director, Jennifer Lahl.
[Some information and stats have been updated.]
Q: I've followed your story and founding of the Donor Sibling Registry for some time now. When you founded the DSR it was a direct response to your own son wanting to find his biological father and siblings — right? What have you been most surprised by in running the DSR for 20 years?
A: My son grew up knowing that his donor had signed up for anonymity and that the chances of ever meeting him were slim. So when he found out that he did indeed have half brothers and sisters out there (children also conceived from the donor that I used), he wanted to know them and wondered if they also had any interest in knowing him. His thinking was that even if he never got to know his donor, he might be able to experience that "invisible" part of himself in these half-siblings. The site was therefore created as a place to be found. Respecting donors' privacy and their right to remain anonymous, if that was their original agreement, was important to my son, so he wanted a place where he (and others) could make themselves available to be found.
We hear from sperm banks all the time that these donors were promised anonymity, and they should not be sought out. So, the most surprising thing to me was that right from the start donors started coming to our website and registering. Many of them are very interested in connecting with offspring. Many feel that they never had a choice about anonymity, and most were never properly educated about what being a willing-to-be-known donor actually meant. Some have had a change of heart over the years, as they realize what contact might mean for those whom they helped to create. Many are curious. Many have children who want to know their own half-siblings. We currently have more than 4,100 egg and sperm donors who are on the site, willing to make themselves available for contact. We never dreamed that so many donors would be willing to register on the DSR.
Q: What has disappointed you or frustrated you most?
A: The industry. There is a huge disconnect between the industry and the families that they are helping to create. They are very slow to appreciate the importance of donor-conceived people making connections with their half-siblings and/or their biological parents. They are still resistant to adequately educating both donors and recipients at the front door so that they can make truly educated choices about donating and about accepting donated sperm or eggs. They have also been neglectful in regards to addressing donor families' needs out the back door and into the many decades that lie ahead. Achieving pregnancy is not the end of the story! The banks are responsive in regards to helping people get pregnant, but then do not offer support to donor-conceived people wishing to gain more information on their genetic and ancestral history. Many will not facilitate mutual-consent contact between offspring and their genetic parents. They do not adequately update medical records and share important medical information. They do not accurately monitor (or limit) how many children are born from any given donor. And some sperm banks, like Fairfax and CLI, have refused to give donors their own donor numbers, thereby actively trying to prohib donors from connecting with families. Some sperm banks, like NW Cryo/California Cryobank, have threatened people for testing their own or their child's DNA and for reaching out to close DNA relatives.
Former California Gov. Jerry Brown once said, "First you have a desire, then a need, then a right, and then finally, a law." We can apply this idea to donor-conceived people and their right to know about their ancestry, genetic relatives, and medical history, and maybe someday a law that serves their best interests.
Q: You've obviously learned so much. Both from your own personal infertility story and through your leadership in assisting families. Tell me some things you've learned and want to pass on to our readers.
A: More than three-quarters of our surveyed donor offspring would recommend that prospective parents use a willing-to-be-known donor. There is no good reason to choose an anonymous donor. Why bring a child into the world who will have no chance to ever know their donor or anything about that "invisible" side of themselves — their ancestry and their genetic/medical background? Would you want your child to one day say, “If you could have chosen a donor that I would have had the chance to know someday, why didn’t you?” Not all donor-conceived children are curious, but you don't know if you will have one who is. Please, educate yourself on the clinic or sperm bank you are about to use. Find out if they are responsive to families' needs post-pregnancy. Be honest with your child and disclose the truth about their conception right from the start. And please, honor your child's curiosity and right to search, find, and connect with their biological family.
Some sperm banks offer "open" or "willing-to-be-known" donors, which means that a child *might* have the opportunity to meet their donor when they are 18. I feel that 18 is an arbitrary number, only in place to protect the sperm bank's liability. Evidence of thousands of donor-offspring connections on the DSR shows us that if a donor and a child (and their parents) are willing to make mutual consent contact before a child is 18, that can be an extremely enriching experience for all involved. My son Ryan met his donor and grandparents when he was 15, and several half-siblings also while still a teenager, and they were all extremely positive experiences of expanding our families.
Q: What kinds of things give you hope? What encourages you and causes you to keep going?
A: I know that the DSR's work is making a difference in people's lives. Each time I hear a heart-warming story of connection between half-siblings or a donor-conceived person and their biological parent, it makes me know that what we are doing is worthwhile and valuable. Each family that I hear from that has decided to tell their child the truth, or choose a "known" as opposed to an anonymous donor, or thinks seriously about donating eggs or sperm because of what they read on the DSR — it lets me know that as a community, we can influence decisions and lives.
Q: The infertility industry, as it is currently practiced in the U.S., is often referred to as “the wild west” in regards to the lack of regulation and oversight. Do you have some ideas and suggestions for regulation or legislation?
A: The industry is unregulated and is in dire need of some sort of oversight. We have many sibling groups of 25, 75, and up to 205+ on the DSR. No one is tracking or knows how many donor-conceived people have been born. Our research shows that between 22%-27% of sperm donors donate to more than one facility. No one is tracking, updating, or sharing vital medical information. Thank goodness many of these families can share medical information with each other on our site. No one is addressing the needs of the donor-conceived. No one is tracking egg donors' health histories. We have partnered with prestigious academic institutions all around the world, like Cambridge University in England, and have been conducting and publishing many full-scale studies of donor families, because the infertility industry has just not done so. We hear that the industry would prefer to "self-regulate." Well, that just is not working. The reproductive medicine industry has been aware for years about the large groups of half-siblings, yet we see no movement toward updating their record-keeping — only a continued dismissal of the research being published.
Although I am unsure of how the government would do at such a task. Maybe a group consisting of government representatives, industry representatives, therapists, bio-ethicists, donor-conceived people, parents, donors, and other interested parties. I believe we should look to other countries that have regulated and see what has worked and what can be improved upon within their systems.
I am very clear about the problems ... but not so certain about the solutions.
Q: What is the most important piece of advice you wish you could convey to all parents of donor-conceived children, based on your experience with thousands of families built by reproductive technology?
A: The word "gamete" is used in a clinical setting for the egg or sperm product that is sold to the bank and then purchased by prospective parents who need it. The term may make it easier for some parents to think of it as simply a "donated cell," or a "piece of genetic material," and nothing more. But I know very well, from my own son and from the many other offspring I’ve talked to over the years, that this may not be how they think of it. Many kids do accurately think of that “cell” as one half of their genetic background and heritage.
My biggest piece of advice to parents is to let your kids choose for themselves how they define their donor relatives in reference to their life.
My greatest fear is that a child who is told that the donor did nothing more than donate a “cell” or a "piece of genetic material" grows up unable to express their true thoughts, curiosities, and feelings on the matter. I’m not a psychologist, but I do consult with many and know this kind of suppression is not healthy — for the child, or for the parent/child relationship.
Again and again, we have heard on the site from donor-conceived adults who have a strong desire to understand this invisible side of themselves. We have heard numerous stories of donor-conceived kids and adults who connect with their donor relatives — half-siblings, donors, and even donor-grandparents — and report it as a profound and meaningful experience. These people are acknowledging — sometimes even confessing — a genetic bond that is surprisingly important to them. That’s why I urge parents to allow kids to decide for themselves. To make sure the child doesn’t perceive normal curiosity as betrayal, or hurtful to the parent. Just because parents feel one way about donor conception in no way guarantees that their children will feel the same way. Please let the discussion and decisions on genetic importance be child-driven over time.
If parents feel a sense of shame about using a donor, or haven't fully processed their own infertility, or grief about not being genetically related to their child, then they risk passing along these unresolved feelings, in the form of shame, to their child. These are issues that are best resolved BEFORE their child is born. That way they can fully support their child with any curiosities they may have about their first- and second-degree unknown genetic relatives. Too many donor-conceived people come to the DSR behind their parents' backs, afraid of hurting them. These parents then insist that their children are not curious — a real disconnect.
Q: A child who considers the donor important is delivering the kind of situation that most heterosexual couples want to avoid, right? Isn’t that why so many couples decide not to tell their children the truth about their origins? Fear that the donor will replace the non-biological parent, not in day-to-day living, but in emotional connection?
A: Yes, fear (or insecurity) is the main reason couples don’t tell. Shame about infertility is another. A large number of non-biological parents (men and women) believe it stigmatizes the relationship — or at least their standing in the family — if people know that someone else was required to create that child. This is a very understandable, common concern. But for a parent to relegate their importance in the family as being related to whether they can produce sperm or egg is really, when you think about it, a secondary role.
Our reproductive “goods” have absolutely nothing to do with our role as parents. And to think otherwise is a demeaning position — for ourselves, our partners, and our children.
It might seem contradictory that lack of biological connection means nothing in our parent/child relationship, yet the biological connection to the donor might mean so much to our child. But that’s exactly the point. A donor is not important to the child in the way we tend to think. As parents, we’re off the mark when we think our child wants to find something in the donor that he cannot find in us. Really, we’re irrelevant to the story. Our children want to find connections with donors as extensions of themselves, not as extensions of their parents. They have parents. What they don’t have, as fully as they would like, are answers related to their very personal and individualized self-identities. They want to know about their paternal (or maternal) ancestry and medical backgrounds. That’s something we cannot give them. Only the missing donor can.
Q: Let me press the point a step in another direction, then, as I’m sure many parents are inclined. What, really, can it harm a child to not know the truth of his or her origins? By not telling them they are donor-conceived, aren’t we really saving them from asking questions that might be difficult to answer?
A: A child who doesn’t look like his mother or father, and doesn’t share some of the same elusive genetic mannerisms, will just as easily wonder why he or she feels unconnected. Many donor-conceived kids who learn the truth as adults are actually relieved to have an explanation for something they felt but couldn’t understand earlier. And then, as adults, they simply have a stronger round of emotions to get through about why their parents didn’t respect them enough, or trust them with the information in the first place. Many adults feel a stronger bond with their parents after learning the truth, as the relationship between them is now open, honest, and based on truth. Adults who find out or are told at a later age about being donor-conceived can also feel a great sense of betrayal and/or anger. That's why I recommend starting the story preverbal — when your child is a baby before they can even understand the words. Then it just becomes a part of their story and a part of who they are.
Q: What, really, is your agenda in developing the Donor Sibling Registry, and in encouraging families to talk about such private matters?
A: My goal with the DSR organization is simply to help educate those considering using donor conception, those considering donating, and those of us who made decisions long before we were aware of the true ramifications so that we can better serve the needs of not only our children but also those to come. Also, we want to have a safe place for donor-conceived people to educate us about their needs and issues.
I realize that these discussions can sometimes be uncomfortable. It’s an emotional area, and we all have different backgrounds and values to respect as we make our own decisions about what is the right thing to do in our own families. But we all deserve the right to make educated and fully informed decisions.
One thing I do recognize is that the donor industry has so far belittled or neglected or forgotten the rights of the children being born. It has always been about the rights of a parent to have a child, the rights of a donor to be anonymous, and the rights of a sperm bank or egg clinic to make money. But missing from that conversation has been the rights of a donor-conceived child to know about their origins — their ancestry, their medical background, and their close genetic relatives. This is a very important debate and until we bring it up for examination, not only among ourselves as donor-conceived families but also in the larger public eye, the industry in the United States, and around the world, will not make any progress.
And I do strongly feel, as did people in the adoption industry before us, that the industry does need to make significant changes.
Q: Is it the donor industry’s job to implement changes, if parents aren’t asking for them?
A: Many parents are asking for them. Some donors are also asking for change. And more importantly, many donor-conceived people are demanding change. That’s why I’m looking to help them build a stronger, collective voice so that there can be greater impact for the most basic questions we should be talking about. Some parents and some offspring do have different perspectives on what is important to them. We do need to respect the fact that not everyone will agree. But agreeing to disagree is very different from not having the collective conversation at all. Of course, the reproductive medical establishment isn’t going to lead the discussion. They have no financial incentive to do so. That’s why the kind of conversations that happen on the DSR and through research, outreach, and media that we initiate can be perceived as very threatening to them — stirring up debate in an industry that has otherwise been very content to exist on a secretive, private terrain. The thinking among many in the medical establishment that I’ve talked with is that if it’s not broken, why fix it? But of course, it IS broken. Many of our kids do suffer from our choices because we usually aren’t thinking them through the way we should. It’s that “thinking things through” process that I’m hoping to keep facilitating. I’m not trying to make decisions for families. My goal, really, is to bring up the things I’ve learned and enable others to do the same so that parents can make educated choices.
Q: What frustrates you the most about the choices that some parents are making — decisions that you can try to educate them about, but that are ultimately out of your control?
A: Without a doubt, it’s the shame factor. Unconsciously or not, parents can make it so much more difficult for their children to feel pride about the way that they were conceived. Obviously, our children were wanted. Parents wouldn’t go through the steps they do, with something as costly as reproductive technology, if their children were not greatly desired. Yet even a child who doesn’t know he was donor-conceived is going to be denied that truth because the parents feel shame, insecurity, fear, or some other negative emotion. Maybe it doesn’t feel that way to the parent and maybe they genuinely do feel they are protecting their child. Maybe their strong love for the child after birth makes it more difficult to tell the truth later on, for fear of spoiling the attachment or adding an artificial ingredient to something that is so powerful a bond. But in my view, it’s never healthy to mislead your child. Family secrets are always toxic.
In my view, the parent who feels shame about infertility cannot help but project that shame onto the child. In my view, the couple who feels an imbalance as parents, because one is biologically connected and the other not, have far greater issues to discuss than non-disclosure to the child can cure.
The parent who holds the perspective that biology is more important than honesty is short-changing the parenting responsibility. I do have personal experience with many people who have withheld the truth, for various reasons, and it's sometimes challenging to speak with these parents. Early on, we had contact with the mother of two of Ryan’s half-sisters. The resemblance between her daughters and my son was so strong that she knew after seeing him on TV, without knowing our donor ID number, that they were half-siblings. But she and her husband have no intention of telling their children, who are a few years younger than Ryan, that they were conceived from donor sperm. That was 17 years ago, and she still has not told her daughters.
Ryan now has 21 known half-siblings, many of whom had no idea they were donor-conceived. DNA test results have been shocking. Some have had to promise their parents to never speak of this truth. The shame of infertility is being passed down to the kids as the shame of donor conception. This has created some very difficult family situations and unnecessary struggle and heartache.
Finding biological family, including donors and half-siblings, adds to a child’s world — it doesn’t subtract. I strongly believe our decisions as parents should be made with the best interests and the rights of the child in mind, not the fears of the adults.
Q: If donor anonymity is abolished in the U.S., as it has been in many other countries, won't we lose our pool of donors?
A: Let's just say, for argument's sake, that the numbers of donors did decrease. Do the ends always justify the means? Does a parent's right to have a child trump a child's right to know where they come from? We don't have enough organ donors in the U.S. either, but does that give us the right to resort to unethical measures to ensure that we have enough hearts or livers for those who need them? So if there were to be a donor shortage, I believe that this outcome would be more desirable than current practice whereby we are creating children who will have no access to their ancestry, medical background, or genetic relatives. We shouldn't sacrifice ethics for a parent's right to have a child. Having fewer available donors just might be the price of having a more ethically and responsibly run industry. Additionally, "anonymity" is already long gone. The reproductive medicine industry needs to acknowledge this fact and move forward accordingly.
Q: What are the most important changes you would like to see happen in the infertility industry?
A: Ryan and I support the following objectives:
1. Acknowledge the end of donor anonymity. Many egg clinics and agencies are already writing the DSR into their contracts so that parents and donors are connected right from pregnancy or birth. Sperm banks can do the same. 18 is an arbitrary age (sperm bank liability); many donor offspring desire to connect long before the age of 18, and we know that thousands of offspring have formed meaningful relationships with their first- and second-degree genetic relatives while still children. Why try to keep a child from their genetic parent for 18 years?
2. Track all recipients, donors, and births and safeguard all records in a central databank indefinitely. Information to be accessible by all involved families.
3. Mandate reporting of donor-conceived live births from each donor.
4. Limit the number of births conceived with the sperm or eggs from any given donor. 10 is what our community feels comfortable with.
5. Require donors to regularly update their family medical history. Medical information to be shared among families.
6. Mandate full genome sequencing for donors. Share information with families.
7. Push our respective governments to inquire into follow-up health histories of egg donors.
8. Require mandatory third-party counseling for all prospective donors and parents.
9. Sperm banks and clinics should properly educate donors about their legal and financial protection so that they feel safe to come forward.
10. Sperm banks and egg facilities need to properly educate donors and parents about DNA testing (along with public records, Google, and social media), and how it has essentially ended the guarantee of anonymous gamete donation. Stop selling every single vial of sperm and every egg as "anonymous," whether for 18 years or forever.
Contacting your donor for the first time can be an exciting yet scary experience. You might be nervous about making a good first impression, or you might be worried about scaring them away.
Here’s some advice for contacting your donor for the first time:
Be gentle and respectful. This can be a scary situation for donors who haven’t yet been contacted, or who haven’t told their families they donated, or who have family members who are against contact. You want to get your foot in the door as gently as possible.
Reassure them so they know you will allow them to set the boundaries. It can be very important for the donor to know they’re in control of the situation.
Let them know that you don’t want to disrupt their family in any way. You just want to give them the opportunity to know you. This should be an invitation, not a demand.
Let them know that you don’t want anything from them — not time or money or another parent, just the chance to know more about where you come from. For starters, explain the importance of knowing about your ancestry and medical background.
You can also let them know what type of relationship you’d be open to. A friendship? A more familial relationship? Tell them why you think this connection could be fulfilling for both of you.
Appeal to the donor’s heartstrings. Tell them about you (or your kids); it’s helpful to make yourself more than just an idea — an actual human being, and one to be proud of.
Send photos. Again, this appeals to the donor’s emotions. Seeing similarities with the children they helped to create can be profound for a donor who wasn’t sure about contact.
Know that if a donor doesn’t reply or says “no,” it isn’t because of who you are. It’s likely because of their family situation, their lack of emotional bandwidth, or a lack of understanding about what connecting might mean for them and their family. Their hesitation might also be about their own health issues, fear of not being “good enough,” etc.
Have patience. Sometimes a donor needs some time to work things out with their family members. If you get no reply, try again in a few weeks/months. If they say no, let them know you’re always available if they change their mind. Give them space to hopefully work it out and come around.
Keep the focus on yourself (or your kids), even if you know about other half-siblings. Consider sharing that news in upcoming correspondence.
